17 People Describe What It's Like to Have an Eating Disorder

Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “NEDA” to 741-741.

Unfortunately because of diet culture and bogus beauty standards, many people know what it’s like to look in the mirror and not like what they see. More than half of Americans say they want to lose weight. And while this disordered relationship with our food and self-image does affect people greatly, unless you have an eating disorder, it’s hard to imagine what it’s really like. Because an eating disorder is not solely about food or a pursuit to “look beautiful.” For those who have the mental illness, it can be so much more than that.

1. “It’s like being in an abusive relationship where one minute it’s spewing hateful thoughts about you and the next it’s apologetically promising that if you listen to what it says you will achieve happiness.” — Bethany R.

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2. “Like fighting in an invisible argument every single second of every single day. Like having a little bully sitting on your shoulder all day, every day, criticizing every single thing you say, do, eat and think.” — Emily A.

3. “Living with an eating disorder feels like you’re constantly at war. Like your best friend who has helped you cope in the past is trying to kill you. Living with an eating disorder is not really living. It is like trying to take a breath in a smog-filled room, each breath feels like it is killing you.” — Denise J.

4. “Imagine someone living in your house who doesn’t have permission to be there and won’t leave. They sounded kind of helpful at first, but eventually started taking over. They tell you what you’re doing tonight, they tell you if you’re pretty enough to wear that dress or go out on that date, they take your debit card and shop for dinner and you don’t like what you’re now having. Imagine you try to get that person to leave and they bunker down. You, your family, your doctors tell them to leave and they don’t. They control you more. Those things you could do with their permission stop — you do nothing now. You’re alone with them. Eventually, they threaten you and brainwash you, and by the time you’re done, they have you convinced you can’t live without them. You defend them to your friends and family. You pick them over other real people. At some point, you have a brief moment of clarity and you let someone begin the long process of eviction. You learn to disagree with and disobey that person living in your house. You force them into a closet or a basement, and even though you hear them screaming, you can walk out your door for a while. Eventually, you realize they have gone, but the damage they left doesn’t disappear. You clean up what you can and cover up with paint and plaster. You move on and try to forget about that person who lived in your home, but they invade most of your memories, because they were so present for those important moments. You make new memories and you meet new people, but every time you hear a bump in the night, you secretly wonder if they’ve finally come back.” — Kaitlin H.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

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5. “It’s like when you’re watching a scary movie and that girl decides to go into the dark spooky room alone and it’s making you angry just watching it happen… ‘Stop! Don’t go in there! Why is she going in there?’…Except you are the girl and you’re watching yourself, but you still don’t feel like there is anything you can do about it.” — Amanda A.

6. “There is a voice in the back of my head every day. Some days, this voice is louder than others. It tells me everything around me is falling apart and I am not worth it, but if I can control what I put in my mouth, everything will be easier. It tells me what to see when I look in the mirror. And even though I know the voice is a lie, I still wonder, ‘Is it?’ It is exhausting, it is an uphill battle, but there is still hope I cling on to when I take three steps forward and one step back.” — Catherine Z.

7. “An eating disorder is being trapped in a room with an angry tiger. Recovery is learning how to lock the tiger in a cage, then taking him out three to five times a day, walking him around the block, and locking him up again.” — Jen R.

8. “My eating disorder was like a faulty parachute. I would strap it on for safety, trust it and I would jump from the plane… a brief moment of bliss would be followed by a crash landing and feelings of shame, regret and remorse. I would stand up, brush myself off, put on a smile, say ‘I am fine!’ and strap on the parachute again. I thought is was my safety.” — Brooke H.

9. “It is your secret shame and your greatest accomplishment all in one. It is like Stockholm syndrome where you have fallen irrevocably in love with the terrorist holding you prisoner — the need to please them outweighs all common sense.” — Tami B.

10. “Living with an eating disorder is like constantly walking around with a cement bag on your shoulders. Feeling constant anxiety to try to hide the shameful weight on your shoulders. Feeling like a failure because you can not seem to do a simple act of feeding yourself. Constantly disappointing family and friends around you (as well as yourself) because going to gatherings or spending time with people always involves food. The feeling of being trapped with a plate of food and people commenting on what is on your plate or how much you did or did not eat is not enjoyable and causes more anxiety than anything. Lying to avoid conversations or being attacked brings on a huge amount of guilt as dishonesty is not a quality we wish to practice.” — Suz E.

11. “I always explain it by saying it’s like when you write a word down, but the spelling looks wrong… but it’s not. That’s what happens to me when I look at myself or think about myself. I know it is perfect the way it is, but I hate it and want to change it and it won’t stop bothering me until I relapse and restrict or start purging again.” — Dani V.

12. “It’s watching life go by without participating in it because of the constant tug of war you are having with your thoughts.” — Joseph L.

13. “It’s like living with a drill sergeant in your head. Even after you get to a place where it’s under control, what you have being through will always be in your head, even if it’s far back.” — Madison K.

14. “It’s unrequited love. You become obsessed with this idea, this future, this picture in your head of your perfect life, and then you realize that person doesn’t love you back. You want to forget and move on, but every day you wake up and think ‘maybe today will be different, maybe today they will love me, this will be worth it.’ Your thoughts always come back them, no matter how hard you try to fight it, and it’s exhausting, embarrassing, overwhelming. You don’t want to talk to anyone about it and instead plot ways to make them love you, knowing it is terrible for you. You live inside your head, in this fantasy world, trying to forget that everything makes you think of them.” — Samantha D.

15. “It’s like you’ve been swimming and swimming for hours and every time you think you’re about to find the shore, it moves further away. You’re constantly exhausted and struggling for air. It doesn’t end, you’re drowning and until you decide to stop reaching for that impossible goal weight and start eating. It’s hell.” — Sara P.

16. “Having an eating disorder is like seeing a chair in front of you that is painted red. You know it’s painted red. All the people you love stand beside you and insist the chair is green. Your life depends on realizing it’s green, but you never see it. Eventually you may learn to trust your loved ones. The chair must be green. They love you and wouldn’t lie to you… right? But still, no matter how long you stare at it, the chair is clearly red. So your survival depends on trusting their judgment above your own in this particular case. And that is hard. As. Hell.” — Sarah G.

17. “Your body is a ship. Your mind is the captain. The captain plans a voyage to circumnavigate the world. He packs up the ship with only a few gallons of water, a little bit of food, about half a tank of fuel and no form of communication. This captain will stop at nothing to accomplish his goal of sailing around the entire world. He’d rather see his own ship disintegrate and sink to the bottom of the ocean than to stop the mission and take on more supplies or ask more experienced navigators to help him and his crew. Because to this captain, asking for help or refueling is weakness. Miraculously, the captain makes it around the world, but all that is left of his ship are a few planks of wood and a paddle he had to use to make it the last few miles. Surprisingly, the captain isn’t even happy he accomplished his mission. In fact, he thinks he made his initial goal too easy. He makes a new goal to sail back around the world, but this time with half as many supplies as he started with the last time.” — Bobby K.

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When Your Eating Disorder Tells You It's Trying to Help You

Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.

You deserve this, can’t you see it? Look in the mirror, are you blind? Gross.

Why did she keep repeating these things to herself? Why didn’t she understand it never would get better if she kept thinking like this? Everyone has the right to live. Right?

Don’t you get it? If you don’t do something about yourself, no one will ever like you. Do you think you’re good enough? Didn’t think so. I think you understand why you have to do this. It will get better once you’ve reached your goal, everything will be perfect then. Forget about everything else, all your focus on this. ALL your focus.

If she worked day and night to reach her goal, it would get better. If she failed one day, she would be even more worthless. A punishment maybe, a little less food?

Yes, you will be just fine with less food. I promise you. So you’re saying you’re hungry? Ha ha! Go to the mirror and take a look at yourself. Still hungry?

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The eating disorder just wanted to help her feel better. Because everything will get better soon, right? Later, when she wasn’t gross. Later, when she was pretty. Later, when she felt like she could live with herself. Because in this moment, it didn’t matter. What did she have to lose? Nothing. Because she was useless. Useless.

No one else understands like I do. Don’t listen to anyone.

Look! everyone is staring at you. Exactly, you know why. Yes, I promise it will get better soon.

Are you afraid you’re going to die? Like I said, it will get better soon.

But it isn’t going to be better. It will never get better this way. The girl had already figured this out. She knew it. But she couldn’t get herself out of this. She knew deep inside this was not the way to happiness. This was a one-way ticket to hell. But it was already too late.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

What the girl wanted most in the world was for someone to save her. But she could not say it out loud, because then she would have failed at one more thing. She knew she was a failure, but was she really so useless that she couldn’t even do this one thing she had been working on in the past few months? Without it she would be nothing.

She cried herself through the days. There was no hope left for her.

But the day came when she couldn’t make it anymore. The day she was so sick, there was nothing left to do but to save her. The day she got saved. The day she had been waiting for for so long without being able to say it out loud. After that day, it was time to try to live again. Very slowly life started to come back to her, even though she never thought it was possible.

A month after that day, she now feels life again. She knows there are things in life that have more value than the things that occupied her mind during the year from hell.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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8 Messages for My Friends Without Eating Disorders

1. You mean a lot to me: If I have divulged to you that I have/had an eating disorder, you must be pretty important to me. That is not something I share lightly, so if I have shared, I want you to know I trust you.

2. Please refrain from “diet talk” or “fat-shaming”: Though it may not seem like a big deal, calling yourself “bad” for having an extra brownie or commenting on how you need to “diet for bikini season” is incredibly triggering to me. I understand that making comments about how “huge your thighs are” is an activity that can bond women and is prevalent in our society; I can go on for days about how that doesn’t make sense, but that’s not relevant here. What is relevant is that those comments can send me into a downward spiral of my own insecurities. This may not be a huge problem for most people, but I will spend days thinking about how “huge” I am and how you all “must be thinking about how fat I am.” It can cause my behaviors to fly off the walls, and that can be dangerous for my physical and mental health. One seemingly innocuous comment could make or break me, depending on the day/any number of factors, so please just avoid them.

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3. Please don’t tell me about your friend’s disorder: You may have the best of intentions when you tell me “you understand my disorder” because your childhood friend went through this “phase where she stopped eating and got super skinny, but then she got over it when she found CrossFit a few months later, and now she eats super healthy and is super fit, look at this picture of her now.” When you tell me any number of well-intentioned anecdotes about eating disorders, my mind immediately jumps to a number of disordered thoughts: I can get competitive or worried about you comparing my body to your friend’s, or convinced I must do CrossFit to get better, which may not be healthy for me. Whatever my response is, I do not want to see a picture of this girl now. Everyone’s disorders are different.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

4. Please don’t make comments on my body: Hearing about how “healthy” I am now is not always a compliment in my mind. Hearing I’m “thick, but in a healthy way” can send me into internal hysterics. I know you mean well when you make comments about how “sexy” I look in that outfit, but I can then spiral off worrying about the benefits of looking “sexy” versus “skinny.” Body comments are rarely helpful, so please refrain.

5. Please don’t comment on what I eat: Odds are I’ve already given too much thought to the nutrition content of what I’ve put on my plate. If I take a second cookie, I probably didn’t do so cavalierly. I don’t need to hear whether I “eat like a bird” or “must be ravenous today!”

6. Please don’t ask me how low my weight got/how much I’ve put on: This is really personal information. It also doesn’t matter at all. Eating disorders come in all shapes and sizes, so weight is not always indicative of severity. Also, I wouldn’t ask you how much you weigh.

7. I am not “crazy”: This is here more to ease me than for your benefit. I fear that people associate eating disorders/mental illness in general with insanity. I am the same smart, kind, composed person you knew before I revealed to you my struggle. I am not my disorder.

8. Feel free to ask questions: Other than ones about specific weights, I am open to questions. I don’t want this to be an elephant in the room. If you want to know something, come to my face and ask me. If it is something I don’t feel comfortable answering, I’ll tell you.

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This morning, I read an article from Monte Nido called “Combating ‘Fine.’” The article, meant for people who are just starting to consider getting help for an eating disorder, described how people are often deluded by the eating disorder voice into thinking they’re fine and don’t need help, even when those around them are concerned.

“The disorder will use any available evidence to prove to you that you’re fine: you’re still getting good grades, you’re still a star employee at work, your blood tests look normal, you get admiring comments from (terribly misguided) people on the street about how thin you look, you’ve seen sicker looking people than you online…or the greatest argument of all: you yourself have been sicker than this before (however you measure that), and see? You’re fine right now.”

I’ve been here. I was one of the ones who quickly went from “I’m fine” to “I can’t stop,” but that was over a year ago, and now? Now, I am fine. I got help. I had a great support system. My weight is up, and most of my health issues — easy bruising, low heart rate, fatigue, dizziness, irregular periods, bloating and constipation, headache, poor memory — are gone. I’ve been to therapy, and I’ve got all the apps: Pacifica, Recovery Road, Headspace. I don’t exercise compulsively, and my mother asks me what I had for dinner out of curiosity, not concern. I listen to my body and respect that it’s doing the best it can to keep me alive. I am fine.

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This is the tricky part: “fine” is not “good.” Because even though I eat an appropriate amount of calories and keep the panic attacks to three times a week and the “bad” relapses to once a month, I still spend my days preoccupied with food and calories and how much space my body takes up. I still recoil when people touch me, and I still restrict when I’m eating in public. I still bargain with myself, trading exercise and food for a manageable anxiety level.

I am fine, by the standard that I am not starving and I am not dying, but being “fine” does not make me “better” in any way except better at pushing it away and smiling instead. Sometimes I get glimpses of “good” — days where I feel loved and whole and fulfilled before the anxiety and disordered thoughts creep back in. There comes a point where you must choose if you are satisfied with “fine,” with glimpses of “good,” or if you are willing to go the distance for yourself.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

The article I read today was not just for first-time treatment seekers. It is for me. It is for you. It is more anyone who is settling for anything less than wholeheartedly “good.” It is for anyone who is halfway between “sick” and “good,” far enough from “sick” to feel decently healthy but still close enough that you feel discouraged from swimming across the abyss to “good.”

I’m asking you to swim. The article this morning asked me to start swimming and keep swimming in the direction of “good,” knowing it will be murky waters while we visit “fine” and asking me to keep going anyway. Don’t settle for a halfway recovery. Fight for the light, the color, the vibrancy of life. Reject the pieces of your eating disorder you are keeping, and find new ways to cope. Find motivation in the world around you – find it in smiles and shivers and tears and warmth and laughter and love. That is where you are meant to live, not in the abyss of “fine.”

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When 'Ideal Weight' Becomes a New Obsession in Eating Disorder Recovery

After years in and out of treatment centers I have heard the phrase “ideal weight” more than I can count. It’s the idea your body has a set point it is supposed to be at. Now this is helpful when you are underweight and need a goal weight to get up to while you are clearly not eating “normally.” It is not however, helpful for me now.

It’s not helpful for me now because I am sick and tired of worrying about moving out of it in either direction. I used to live in recovery just waiting to hear each week if my weight went up or down. I used it as a measure of success. I thought it was different than when I was in my eating disorder because I was trying to stay healthy. But it wasn’t different.

It was an obsession nonetheless.

This obsession with maintaining a weight or losing weight is not unique to people with eating disorders. It is everywhere. For some reason the idea of having a weight that changes as we go through life has become confused as something bad instead of natural. Somewhere through the fatphobia and diet culture we have stopped trusting our bodies to tell us what they want and need. We tend to believe if we do not keep “control” over what we eat, we will overeat. This is a lie perpetuated by diet culture. We are not in fact, smarter than our bodies. As long as we are healthy mentally and physically, our body doesn’t need us to make rules for it. Our own ego is getting in the way of our health and happiness. The only time I have ever wanted to overeat was when I told myself I couldn’t have something.

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Even more importantly, I have grown angry at the idea that one body shape or size is better or more attractive than another. I’m tired of hearing smaller looks healthier because there are more and more studies coming out about health at every size and how unhelpful a BMI chart is. I came to this headspace after a lot of conversations that looked like this:

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

I had this conversation many, many, times and at the end of each one I was forced to think about what gaining weight would mean about me. I was horrified at the idea of being an “anorexic” who got fat. I was terrified about what it would mean about me. Would people think I just lost all self-control? Would they think I looked better before? Then I had to think about these worries. Why was I having them? Why was I concerned about what people thought of my size? At the end of our conversations I always came to the conclusion I was miles happier than I was before. Why is there the idea that we need to have heightened self-control around food. Why do I still care about this?

The reality is it is so much harder for me to give up control around food. It’s taken strength to listen to my body’s needs instead of always focusing on the control aspect of eating. People have had an issue with this idea when I’ve expressed it before and I get it. It’s against everything we’ve been taught. We live in an era of diets and “cheat days.” However, I’m here to say you don’t need to wait for the next excuse to eat what you want. Listen for the cues. I win every single time I grab the bag of semisweet chocolate chips out of the freezer because they sound so damn good and then put them back when I’m full or have had enough of them and am craving something else. I don’t need permission from a calorie tracker, I don’t need permission from allotted points, I don’t need permission from anyone or anything besides my body.

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I lived a life where I spent more time creating rules for myself and worrying about what I was and was not eating instead of doing the things I actually enjoyed. But I’m recovering. So I’ll say it again. There is no body size better than another. I am not here to be aesthetically pleasing. I am here to write, love, spend time with friends, make a difference and eat some damn good food.

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Dear Friend, I Fight My Eating Disorder in Memory of You

It’s the girl who first saw you in a group during treatment and took note of how gorgeous you were. I was jealous when I first saw you, as I compared every ounce of myself to you. I remember your pearl earrings, your turquoise Pandora ring, flannel and white Vans, which I soon took note of as your trademark outfit. I remember how you stayed quiet, while the other patients shared how they felt about whatever the group topic was. I remember your sense of peace.

I wasn’t in treatment for long before you transitioned into my program. After your first day in the partial-hospital, I was certain you weren’t coming back. I listened to the other girls talk to you, and I listened as you said how much you hated it here. That is something all of us girls and guys bonded over in treatment, our resentment of the place that was supposed to be saving us from our eating disorders.

I learned later on that not everyone can be saved.

I remember telling you I would eat the pudding you hated so much with you so you didn’t have to do it alone. I remember going to the Pandora store, getting the My Princess ring we talked about and showing you how pretty it was after I got it. I remember you looking through my altered book, telling me how you liked my art.

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I remember playing Bananagrams, and you asking us how to spell words you were unsure of. I remember Occupational Therapy group, where you tried time and time again to make a bracelet with the tiny beads, getting fed up with how small they were, then laughing together after they all fell off the string. I remember the day you wore a dress because your doctor “made you,” and telling you how cute you looked, even though you hated it as it showed your body. I remember the little things, which now, seem to be so important.

Nicole, I wish I had been able to be there for you. I wish I could’ve told you that you had the world in front of you, and in recovery, we both could’ve taken it by storm. Both coming from Catholic high schools, we shared a small bond that no one else on the unit did, but I wish I could’ve told you I understood you so much more.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

I wish I could’ve told you how beautiful you were and how you lit up the room when you smiled. I wish I could’ve helped you more and been there for you during the times when your eating disorder put you at your lowest. I wish I could’ve been the friend you needed, to encourage you, to talk to you and to listen to the struggles you had but that we also shared. I wish I would’ve given you the hug you needed. I wish I could’ve helped you pick up the pieces and grasp just how enough you were. I wish we had more time.

To the girl who got tired in the fight against her eating disorder, I hope you can look down and see how loved you were, how strong you were and how beautiful you were. I hope in Heaven there aren’t eating disorders, depression or self-harm. I hope by the loss of your life, you have saved someone else. I hope you saw the fundraiser I put together for you, allowing me to send almost $800.00 to the National Eating Disorders Association in your memory. I hope you know on the days when I struggle to hold my own recovery together, I think of you and vow to myself that I will do this for you.